Saw those 4 letters on the license plate of an older SUV while driving around Berkeley on Tuesday—–no kidding!

Sunday we drove to Philadelphia to see a good friend. He was driving into the city from one direction and we from Jersey, and we agreed to meet in South Philly. We drove past what I noted was a Vietnamese restaurant and then lines of police cars and small groups of policemen, and lots of people walking vaguely in the direction of a giant pinata that Jim promptly dubbed “like the Trojan Horse” (it was a burro shaped pinata) and that we later realized was part of a Day of the Dead celebration. Jim found a barely the right size parking place on a city block and maneuvered the car in. We started walking, ducked into an Italian seafood restaurant to use the ATM, and sighted our friend, Hal, across Washington Avenue. Lunch was suggested and we started to debate about what to eat.

“Spring rolls,” Charlie said, soon as we asked him what he’d like so we backtracked to a Vietnamese restaurant and sat down. Charlie insisted that Hal sit next to him as conveyed by a definite “no” when I asked if he’d like to sit by me. The spring rolls that Charlie likes are technically summer rolls but somehow we referred to them as “spring rolls” when Charlie started to eat them, and the name stuck. (It’s my error, most likely—-the cylindrical rolls remind me of the Chinese egg rolls, aka spring rolls, that we used to help my mom make.) If you haven’t had them, they’re made of rice paper made soft from soaking in water, rice vermicelli, shrimp, green onions, and sometimes slivers of pork, and they’re served with a salty-sweet-sticky peanut dipping sauce. We also ordered Charlie a bowl of rice vermicelli with actual spring rolls, deep-fried and crispy.

He ate the soft summer rolls with gusto and used his soup spoon to get every last drop of sauce, then set to work on the noodles. He poked at the spring rolls, raised one to his nose to sniff it, and put it back in the bowl. When I offered to trade him my vermicelli for his spring rolls, he readily agreed. I handed over my bowl after a couple of requests pertaining to fork, face, and napkin, and then hastily leaned across the table when I saw that Charlie’s water glass was perilously placed on the edge of the table between him and Hal.

I’m not telling this story to be a restaurant critic or to add another chapter in the annals of “how to take an autistic child out to eat in a restaurant.” (One thing that works for us: Leaving happy and, preferably, with a reasonably full stomach is always preferable, even if you have to eat fast.) (Another thing, while I’m at it: Choose a place that’s rather noisy and that will tolerate a bit of a sticky floor.) I especially noted Charlie’s disinterest in the deep-fried brown spring rolls and preference for the soft white summer rolls. Sensory sensitivities (tactile defensiveness being perfectly conveyed in Whitterer on Autism’s line drawings) are a topic raised, it seems, by individuals at all “ends” of the autism spectrum. One friend refuses to wear wool anything, and knit sweaters more generally (something about what they feel like on said friend’s arms). In the midst of a back and forth about being “high-functioning” vs. being “low-functioning,” a commenter noted some who need special treatment, due to sensory sensitivities that make certain textures, colors, tastes (and I’d add, shapes, smells, temperatures) of foods unbearable, to the extent that some individuals may starve themselves.

Luckily the above-mentioned friend, polarfleece was invented (probably luckily for Charlie too—-rare’s the time I’ve tried him wearing a sweater). We also discovered for sure last week that Charlie prefers his clothes on the loose side. He’s been growing so quickly that he’s been growing out of his clothes at an unprecedented rate. I realized, belatedly, that his pants must be pinching him hard in the waist and who knows but that had something to do with some seemingly unaccountable moments in the past few weeks? Larger pants were duly purchased; Charlie not being one to go through the tedium of dressing rooms, I checked the length and we were out of the boys’ clothing section. But while the length was almost just right (I cuffed the bottoms), the waist was way to big and Charlie was regularly enjoined to pull up his pants. He hasn’t seemed to mind doing this now that the pinching in the stomach problem has been solved, but he really needed a belt, and so back to Target we went on Saturday night.

I was still wary of fastening the belt too tightly. Charlie is certainly verbal—-how else would we have had lunch at the Vietnamese restaurant—-but telling us “my pants are too tight, it hurts” or “my stomach feels sick” or “when you talk in that tone of voice, you remind me of something bad that happened in the past”: His words can’t (yet) convey these, so we have to look at what he does to get a sense of what he’d tell us if he could.

Such limited language ability suggests—says—”low-functioning,” I guess. I always stumble over that word and over the use of the word “functioning,” whether it’s “hfa” or “lfa” that are referred to. A CBC News video, Positively Autistic, occasioned some pointed discussion about “lfa” and “hfa.” There’s plenty that Charlie can’t do that children his age can. His homework involves writing his first and last names and the numbers 1-5, and doing single-digit addition with a calculator. He walked, sometimes ran, ahead of the three of us on South Philly streets, and stopped at the sidewalk and looked back at us before crossing. He started moaning and sounding overall distressed and I finally heard him asking softly for a “green drink.” He tensed up and sounded really distressed when Jim and I talked too much, and too avidly, about the latest goings-on at school for Charlie, who’s been going through “transition pangs.” We let our voices trail off and took turns talking to Hal about things when Charlie was out of earshot.

Yes, Charlie isn’t able, at this point, to talk himself about what’s going on at school, about how his pants fit, about what he might have wanted to do on Sunday afternoon. But there’s more understanding—more competence to presume—in Charlie than what he says may suggest. (And how able is the average person in explaining their emotions and feelings; why they believe in what they do; why they are voting the way they plan to on November 4th? How often do you get into disagreements, conflict, a fight, over information that is miscommunicated and the misunderstandings that result?)

We walked to Hal’s car first and we all got in, Charlie perched in the middle of the back seat and me squashed into what’s left on the right back seat. We spend so much time in our car—its odometer is nearing the 100,000 mark—that it feels very odd to be in any other car and perhaps especially one like Hal’s, with a pristine back seat free of hidden aged French fries and soda stains. Hal drove us to our car. Charlie lingered in Hal’s, after Jim and I had said our good-byes. He finally said “bye Hal” from somewhere within the blue hood of his sweatshirt, then unbuckled the seat belt and slid out, and ran to get into the back seat, still sprinkled with beach sand and the whiff of summer, of the black car.

We passed the giant pinata again as we left. It wasn’t meant to be broken with sticks to reveal sweets and prizes within but who knows what treasures might be stowed away inside it?

Charlie once took the car key and put it in the lock of the front door lock. We park our car outside and, fortunately, we soon noticed the key in the lock and quickly retrieved it, realizing that our car could have been driven away by the next passerby. Charlie’s never (yet) tried to get behind the wheel and given his visual processing difficulties, that wouldn’t be a good thing to occur.

An autistic 16-year-old in Apex, North Carolina, drives his family’s SUV, damaging mailboxes and cars and accidentally striking his father, today’s WNCN-TV reports.  And in tomorrow’s New York Times, writer Ann Bauer describes how her 20-year-old autistic son Andrew drove her car 70 miles away to St. Cloud, Minnesota, where it was found “scratched, filthy and out of gas but otherwise undamaged”—and why she decided to have him arrested. At 17, he was misdiagnosed as psychotic, put on medications that made him “crazy,” “slipped into full blown catatonia, and was treated with ECT. After living briefly at home and then at a crisis mental-health center, Andrew went to live in a group home where

He was routinely threatened or roughed up by shop owners from whom he had stolen, but even this didn’t faze him. When the police arrived, he would explain that he was disabled and living in a group home and ask them politely to take him back.

They did, every time. On the way, they would call me, and my husband or I would get out of bed and drive across town to pay the bill.

We had meetings, interventions. Each time we lectured him, Andrew would nod gravely, apologize, then go out and steal again.

One night at the group home, Andrew turned to me and said, “I’m not sure I’m autistic anymore.”

“What are you?” I asked.

“I think” — he paused for a long time — “I’m just a thief.”

Five hours later, he stole my car.

Arresting one’s child seems a pretty extreme measure but its ending is not without a little hope, that bit of light that keeps one going. Bauer meets Andrew—in orange scrubs—-in a courtroom where a judge addresses him as “Mr. Bauer” and asks him to explain what occurred. Writes his mother:

“Mr. Bauer,” I thought, strangely pleased. In his deliberate, troubled way, my son had done it: he had found his way to adulthood. And although I didn’t know it then, he would find his way through this, too. But he needed to go through it, not back, and not around. Maybe that’s what he knew better than any of us.

“You Need to Take My Son to Jail” appears in a column entitled “Modern Love” or rather, tough love in rough times.

We tried a new Mexican restaurant Saturday night. Charlie was initially game to try the rice and beans and licked up some guacamole, then put his hands over his ears (classic rock soundtrack playing) and moaned. I finished up my burrito and took him back to the black car, which is so much a comforting space. He was hunched over, but calmed.

Charlie loves to be in motion (hence, his love of the ocean’s waves) and so we’re often at home in the road, in the car. Maybe we’re not exactly living out of a motor home, but sometimes the black car (often with Charlie’s backpack and my overstuffed bag) feels the equivalent. Small wonder, then, that getting home (with the beach house a surrogate for our actual home; we’ve one more week here) feels like we’ve won some race and crossed the finish line to home sweet safe.

Phrew.

So what do you pack besides extra patience—-as noted in an article in today’s Ledger (Florida)—-when you hit the road/maybe not so friendly skies/boat/etc. with an autistic relative?

“No” was Charlie’s not unsurprising response—-with his eyebrows (no other word describes it) furrowed—-when I told him we’d have to drive the bluish Mercury Milan parked across the condo parking lot. Jim had rented it late Thursday night at Newark airport and I’m sure Charlie had paid it no attention when he got on the bus Friday morning. Now he was standing beside the black car, whose right rear tire was a small spare with a yellow sticker and looking forlorn. I tried to find words to explain: “It has a flat tire—the tire’s broken” (what in the world was I saying? “broken tire” sounds like those ragged black strips from a semi’s recap tires strewn on the shoulder of the Interstate). “Remember how we got stuck in the mall parking lot yesterday and the man came and pumped the back of the car up?” “We actually need to get ALL new tires…..”

I tried to avoid saying that the car itself was “broken” as that word has difficult associations for Charlie. There was a time when he ripped, or tried to rip, his favorite photos and then any photo in half, and then cried. I spent a lot of time taping the photos back up and he’d be happy for awhile, and then tear them up again. I certainly didn’t want him to think we’d never use the black car again and tried to offer cheerful reasons for why the rental car would be fun. (For one thing, it’s smaller than our black car, not a bad thing in these times of big ol’ dream cars being put out to pasture, so more driving to more places is theoretically possible.)

I figured that Charlie would be hesitant about the rental car. Since we said good bye to the green car last January, it’s been black car full time and we spend a good amount of time in the car (which often feels like an extension of our condo). The black car is another station wagon and I suspect that Charlie’s used to being able to see the contents of the trunk all the way out the back window, vs. what a mid-sized sedan offers. Throw in that rental car smell and you’ve got something very unfamiliar, for a boy who needs a goodly amount of routine and repetition (yes, his teacher was back—didn’t get jury duty—and yes, he had a better day).

Charlie did eventually get into the blue rental car. Despite the heat, he pulled on his blue hooded sweatshirt and clamped his hands over his head as we drove into Jersey City. We were moving smartly until we went up the on ramp to the Pulaski Skyway. Charlie always looks around with interest as we drive it, as (to his right and left) are spectacular views of lots filled with cars just shipped in, containers stacked into pyramid-like structures, power plant smoke stacks, the Passaic and then the Hackensack Rivers, a correctional facility. If you’re driving east, straight ahead is the Manhattan skyline with the Empire State Building at the center. If you’re driving west, this is what it’s like.

Late afternoon on Friday we got a good long look at that view. The Skyway has no shoulder and two lanes going each way, separated by a concrete divider, and it’s 3 1/2 miles long. So if you can get into an accident, you just have to stay where you are because, aside from thin air, there’s no place to go. As drove up, the westbound lanes were suddenly empty with a lone police car and one black sedan. We went further—Charlie leaning on the windowsill, groggy (he’d had a fabulous swim, with the pool all to himself and me)—and saw cars with more than dents, a tow truck, more police, a firetruck. And then, endless lines of cars stopped and people standing around and talking on their cell phones, talking to each other, and leaning on the Skyway’s steel sides and taking in the view from a place where one normally only drives at 70 mph. There was a certain festive air to the whole scene.

We drove very carefully down our exit ramp at Broadway to Routes 1 & 9 in Jersey City. Carefully, because, once a driver on the on-ramp realized that traffic was at a standstill on the skyway, he or she tried to turn around on the narrow 2-lane ramp and (consequently) narrowly missing us cars going down.

Beneath his hood, Charlie’s eyes were wide open at such strange sights: People standing on the Skyway and going down the up-ramp (if you can’t drive, might as well get out and admire the Meadowlands below and Manhattan to the east).

The rest of the evening was pleasant, weather-wise and otherwise. We took the PATH train and subway in; met Jim; ate a lot of dinner; had dessert and left crumbs all over the carpet in Jim’s office. We took the subway and PATH home, and then drove over the Skyway fast, all traces of the accident, and the lines of onlookers, gone.

Hectic crazy stressful crying yowling (suddenly, in the deep end of the pool all while swimming most excellently) tense scared face and hunched up shoulders.

Yesterday was that kind of afternoon for Charlie and me.

It was an everything not in place kind of day with a call from the ESY director as I was walking out of class. Another student had been having a hard time, Charlie didn’t ask fast enough to go out of the room, the teacher was on jury duty: I was very glad the director added that last point. Charlie’s class had also gone on a roller skating field trip yesterday, so they’d had a day off from their classroom and the teacher wasn’t there…….

He was himself getting off the bus—though I was on my cell about something sad—and looking forward to seeing the speech therapist and then the speech therapist called and it turned out she couldn’t really come. I vacillated a bit too long about how to fill in the time and Charlie went out to the car with his stuff and then needed to come back in and there was loud moaning, extremely loud stomping and NO’s. I talked too loud too and immediately regretted it and we went back inside and then to the pool.

As is pretty much a sure thing, Charlie’s expression changed once he stepped into the water. He was splashing and sinking to the bottom and turning somersaults and floating on his back when two dozen children around his age—YMCA summer campers—–jumped into the pool. I swam along the sidelines and watched happily as he continued his swimming routine, seemingly unconcerned when he got jostled or someone dived in right near him. He did, from time to time, have his eye on the blue and red foam boat that a crowd of kids was sitting and trying to stand up on. With two girls hanging onto it, Charlie pulled himself up on the back and there were some interesting moments when Charlie, just because of the way he was hanging onto the boat, was looking straight at the girls. (I don’t think any words were exchanged.) They drifted about and then the girls jumped ship and Charlie had the boat to himself and he grinned and kicked up a storm.

This was intermixed with sounds of distress and I crouched at the side of the pool and talked about what had happened today—no teacher, speech therapist not able to make it, waiting his turn for the boat—-and he seemed ok. And then he’d smiled and then start crying out again and sometimes it seemed that there were no noises to be heard but his anxious voice—I waited it out and tried (ok; magical thinking) to direct any negative feelings into me and away from Charlie.

Charlie did his own almost-dive off the side of the boat and we went to the slide area. He jumped in eagerly and was promptly almost hit on the head by a small basketball a boy waiting to use the slide let fall. The lifeguard was aghast and stood up and demanded the ball, which she set to the side of the pool. Charlie splashed about and then was stymied because two teenage boys—the ball had been sent down by one of their friends—were leaning on the stairs. Finally they sort of moved and Charlie asked for the towel and we went to shower. I heard my name called: There was a Russian family getting dressed and one of the girls was also K(Ch?)ristina. We all left at about the same time and a tow-headed toddler started running after Charlie, who started to run too. Charlie went out the door and I hurried up and leaned over the other little boy and said he should wait for his mother—she was running down the hall, calling to her son—-I had to go out the glass door as Charlie was on the sidewalk.

We both sat in the car and took a deep breath. I asked Charlie, “What if we go the mall?”—we hadn’t been there in awhile as it’s not what you would call a sensory-friendly place. Charlie said “mall” and then asked for the grocery store and then “mall” again and after getting stuck in very slow-moving commute traffic, we were there and Charlie stood around and waited for me, looking at the ground and around. It occurred to me to tell him that, yes, it was Thursday, but unlike last Thursday, I wasn’t going anywhere, I’d be here, Mom’d be home with Charlie. “Mom and Charlie,” said Charlie.

As we walked out, I felt that twinge of “we did it” as our last trip to the mall had included an unhappy moment on the escalator. I had just back out the black car when a man in another car started gesturing intently at us, or at the back of the car? I rolled down the window.

Flat tire.

I have AAA, on the insistence of Jim ever since we came back to New Jersey and have had to live in the suburbs for Charlie’s education, making long drives into the urban areas where I’ve worked a necessity. I tried to coax Charlie out of the car to go to the food court since we had an hour wait, but Charlie did not want to get out. He sat with the windows rolled down and I stood by the car and explained to a couple of people, uh, no, the parking place isn’t free, I have a flat tire.

And then it got easy. AAA came in record time and put on the spare, Charlie agreed to get out so the car could be jacked up, and we drove slowly, stopped for chicken brown noodles and were most glad to be home. After he ate and practiced cello, Charlie almost fell asleep sitting in a chair and went to bed early, and then cried out a couple of times just as he was about to doze off I told him I hoped that his teacher had not gotten jury duty—at least two of her kids really need her!—and that I’d be here when he woke up (I was gone when Charlie got up on Friday, as my flight to San Francisco left at 7am) and when he got off the bus. I’d be here, as usual, and we’d all do things, the three of us, together, maybe go to New York and more swimming and the beach.

(In a rental car—black car, as it turns out, needs new tires.)

Friends had invited us to a pool party on Saturday afternoon. Jim had been asked to speak at a workshop here so I looked up directions on Google Maps, wrote them down, and off Charlie and I went—-only to spend an hour and 15 minutes driving in circles on both sides of a state road. I should have printed out a map; I mistakenly thought that knowing the names of the streets would be enough. We were going to the home of a relative of our friend but I couldn’t remember the relative’s name; I called information, but couldn’t get a phone number for her residence and my friend’s cell must have been off. So it was back and forth hither and yon and turning into many strange suburban streets.

Charlie sat attentively in the center of the back seat and put up with my sallies to find the house where I had told him we’d see “friends.” Finally, with frustration much increased and the gas gauge much lowered, we turned around, beneath a sign reading Kafka Drive. I left my friend a voice mail full of apologies and we went to the pool at our YMCA.

We stopped in the Family Locker Room where a grandmother suddenly shooed her grandson into his clothes, or I think that’s what she said. A younger woman with shiny blond hair appeared and spoke in a Slavic language.

We went to the pool, where Charlie jumped right in with a big grin. Two Chinese girls were swimming and laughing as they tried to pull themselves onto a huge green and yellow cylinder, their father pulled them across the pool. Charlie swam around them and was soon at the deep end; he commandeered the blue and red boat and kicked mightily, then pulled himself to sit at one end and semi-dove off, slowly reemerging from under the water. He did his trademark medley of back stroke/breast stroke/face in and kick kick kick and then floating this way and that, occasionally pausing to sink down under the water with his eyes closed and his head tilted back.

I swam a couple of laps. “Ni hao ma?” said a child’s voice: One of the Chinese girls was asking me, how was I?. “Hao ah,” I responded, but it’s pretty noisy in a pool and I don’t think she heard me.

She must have heard Charlie, who was vocalizing his enjoyment in the water (and probably relief that we’d gotten to the pool, if not the promised party, after driving into endless dead ends). It was getting a bit more crowded in the pool. A father stood on the side at the shallow end with his two sons and told them, “I want you to swim two laps. One free style, one back stroke.” I treaded water beside Charlie, who was backfloating with his eyes clothes in the deep end and urged him to “move left” when the two boys, dark-haired like himself, swam closer. Charlie took his time moving; he looked so peaceful, just floating, and then he was gliding into the water. The older boy was still splashing across the pool.

I swam down to the shallow end and got out and again heard, “Ni hao, ni huei shuo Jongwen?” It was the dark-haired girl, who must have been about 6 or 7. Did I speak Chinese?

“Woo huei shuo,” I said.

“Ta huei shuo Jongwen?” the girl asked, looking at Charlie, who had found his way to the shallow end and was dunking himself in and out of the water.

I leaned forward. “Ta bu huei,” I said.

“Weisheme?” she asked. Why?

Why indeed.

I said:

“Ta bu huei shuo Jong wen. Ta shi……ta…..…autism.”

She shook her head. I couldn’t remember the Chinese word (it’s zi bi zheng, formed of the three words “self,” shut/close,” “obstruction”) ) and while I was pausing a loud “You come over here NOW!” could be heard. It was the dad of the two boys; with their dark hair, it was easy to confuse Charlie with them in the water. The father raised his voice: “I have been calling you and calling you. Didn’t you hear me? Now come on over and swim some more. Now. NOW.” His son had been hanging onto the big green and yellow cylinder, which the father pushed out of the pool. The son swam slowly to the deep end.

Charlie and I swam two more times up and down the pool. Even with his eyes closed, he always managed to not bump anyone (now the two girls and the boys and their dads were all in the deep end). Charlie maintained that half-hidden smile as he moved in the water. He asked for the “stairs” and the “towel” and then “shower” and then “car, Dad!”, directions I readily followed.

And unlike my Googled directions to my friend’s relative’s house, Charlie’s were 100% right, and got us where we needed to be.

A 3-year-old girl who has a “form of autism” was treated at a hospital and released after jumping out of her mother’s moving car. KY3 reports that:

The mother called 911 to report the girl jumped out of the moving car near the intersection of Farm Road 171 at Farm Road 66, south of Highway KK near Fellow Lake Recreational Area.

The child showed up six-tenths of a mile away from where the mother parked her car. Cleo Link heard a scratching at his door at 6986 N. Farm Road 171 and opened it to find the girl about 7:30 a.m.

An ambulance took the girl to a hospital. Corcoran says the mother has a proper child seat in the car. He doesn’t expect her to be cited or charged.

Yet another argument for child safety locks in the backseat, and on the windows.

With gas prices up, drivers push closer to the end of the tank and more towing services are getting called—–don’t think I can do this and strand Charlie and me on the left lane of the Pulaski Skyway!